I recently listened to a marketing podcast on how important it is to be transparent with your supporters. Oh boy. I guess I have a confession to make. I really don't like fundraising and running a non-profit at all. I did not go to school for business. I hate asking people for money and soliciting for donations. I hate trusting that we'll have enough support at our events to fund research and to keep our doors open. I hate giving up my hobbies because my early mornings and kids' nap-times are most often devoted to foundation tasks. I hate feeling overwhelmed and stressed all the time because tasks take me twice as long as a marketing major or a 20-something could accomplish them. It affects my kids, my marriage, my friendships. I can't tell you how many tears have been shed because I feel defeated almost all of the time. I am a nurse. I am the quiet one that likes to be working in the back ground, not the one in charge. And if I dislike all of this, you can bet I hate asking you, my supporters and volunteers, to take valuable time away from your families, hobbies, etc.
...BUT, every time I want to call it quits and throw in the towel, I can't. Hearing, "Your child has a deadly brain tumor and the life expectancy is 9 months," is not ok. It wasn't fair that Wayland didn't have a chance to survive. Its not ok that Sarah and Cole's only daughter, Phoebe, had her beautiful, young, life taken away because of DIPG. Its not ok that Sophia suffered so much with so little hope. Its not fair that this will keep happening until something changes. Ben and I realized that nothing will change in the DIPG world unless families continue to fund the research for a treatment. We do it for Wayland, we do it for the future children and families because I know if this nasty disease would ever come our way again or my friend's for families' way, I want to know we have a chance to fight and win.
Every year we will be acknowledging a virtue or goal at our annual November fundraiser. Last year it was the obvious - a cure. "Where There are Warriors, There Will be a Cure." After sharing a bit of my struggles with my committee leaders this year, my team and I chose perseverance. "Where there are Warriors, There is Perseverance." I count myself as a warrior. Not because I wake up everyday excited to devote my time to something that is extremely hard for me, but because your children are worth it. Our cause is worth it and Wayland's fight deserves the memory. 2020 has been and will continue to be a really difficult year. That's why we need perseverance. As they say, it takes a village, so please persevere with me. Your support means the world to us and we cannot do it with out you! If you can, please join us at our upcoming November 6 "Where There are Warriors Benefit." Being a warrior is not easy, but the children are so worth it!